Why is transition between child and adult services a dangerous time for young people with chronic kidney disease?

The Challenge

Young people age 14 – 25 years with chronic kidney disease (CKD) have been identified as generally having poor health outcomes and are a high-risk group due in part to poor self-management.

The Research

A team of researchers from Bangor University carried out a systematic review, which compiled, studied and reviewed existing research, with an aim to explore what happens during the transition from child to adult services for young people with CKD.

In order to identify gaps and opportunities for future research this review aimed to:

Identify the transition needs and problems experienced by young people.

Establish the effectiveness, cost-effectiveness and wider impacts of interventions to support transition for young people with CKD.

Explore the views and experiences of transition for young people with CKD, their families and professionals.

The Findings

Empowerment was reported as being the key transition issue young people feeling un-prepared for transition. Some young people feel powerless about being told when they can manage their condition, while others worry about taking responsibility for their conditions with life-threatening consequences.

Young people with CKD said that they needed a range of information to support their transition including information on both clinical and broader life changes. Children’s services rely on parents. However, parents said that there was little information on helping a child with a long-term condition during transition.

The quality of communication varied greatly during transition. As young people get older the review showed that they relied more on informal sources of communication such as friends and online communities, this raises concerns around the quality and accuracy of these messages. Young people said that they needed time to talk about transfer with health care professionals but once they transferred to adult clinics (around the age of 16 -18 years), they were expected to have more knowledge about their condition than they did.

Feedback on peer support workers to help young people through the process was generally very positive. Being non-clinical, support workers were better able to take a complete view of the change from childhood to adulthood accepting that life-changes were linked with health changes.

The efficacy of wider peer support networks is unclear. In one survey equal numbers of young people said that they would like to meet other young people with CKD as would not.

One study examined the impact on educational outcomes of young people with CKD finding that children suffering from CKD pre-puberty had poorer attainment in school.

Some young people experienced a limited hand-over between child and adult services. Young people expressed significant anxiety as a result. Parents also wanted to be reassured that they could cope as moving into adult care often meant loss of the broader family support package.

One study that focused on the role of parents found that they can struggle with the tension between pushing the young person to be independent and being a protective parent.

Few young people rated adult clinics They criticised the lack of pastoral assistance, some calling them impersonal and one saying that transition “. . .felt like being dumped”. Families of young people with CKD said that they feel excluded in adult clinics.

Some young people attributed non-compliance to forgetfulness brought on by the external pressures of a developing social life, changing life-priorities or alcohol use – all risk-taking behaviour that jeopardises their kidney health and overall wellbeing.

The Impact

Findings confirm that young people with CKD share some common transition issues. This review provides a greater understanding into the complexities that practitioners must account for in planning successful transitions for a vulnerable group of young people. Young people’s needs need to be understood and accounted for if transitions, yet current practice appears to be misaligned and dominated by linear health-related pathways.

The review, which was partly funded by the Wales Kidney Research Unit, found that the gap in culture and practice between child and adult services are often too big for young people to negotiate. Integrated health and social care services need redesigning to better accommodate the influence of individual and socio-ecological factors.

Effective mechanisms for engaging young people in research and service development need to be established. Future research needs to broaden beyond a medical lens and be led from alternative multi-disciplinary and social care perspectives, and by young people themselves.